Diabetes is a chronic illness that affects over 200,000 children and adolescents in the Unites States. Living with diabetes requires dietary and lifestyle changes that can be challenging for children of all ages. For instance, monitoring blood sugar levels and administering insulin become routine parts of daily life.
If you or your child has recently been diagnosed with diabetes, you might feel anxious or overwhelmed. Don’t worry: Millions of people have been through the same experience. Hearing from others who are effectively managing their condition and enjoying a healthy lifestyle can go a long way toward easing your anxieties.
Experience Journal, a project of the Boston Children’s Hospital psychiatry program, is a series of stories, videos, and personal experiences that represent the collective wisdom of children, young adults and families living with chronic conditions.
This Experience Journal excerpt features interviews with children and young adults about growing up with Type 1 and Type 2 diabetes.
Melandia Coutinho may be the only 10-year-old who can talk about Harry Potter and the American Revolution in the same breath. She takes Portuguese, plays on two soccer leagues, and she still has energy for homework and climbing trees with her younger brother Marcio.
Two years ago when Melandia was eight, she went in for a routine physical with plans to go to soccer practice afterwards. Her parents Chanda and Jeff Coutinho weren’t expecting big news, but the pediatrician detected glucose in Melandia’s urine and diagnosed her with Type 1 diabetes. “We have no family history of diabetes,” explains Chanda. “We were in complete shock.”
Melandia was referred to endocrinologist Dr. Gregory Goodwin of Boston Children’s Hospital. Within hours of the physical, soccer was cancelled, Marcio was with his grandparents, and Chanda, Jeff and Melandia were packed and on their way to Boston.
What is type 1 diabetes?
Type 1 diabetes is a chronic condition in which the body produces little or no insulin. If managed properly, a child with Type 1 diabetes can maintain a very healthy, active lifestyle, but it takes work and can be overwhelming for families.
The first step toward managing Melandia’s diabetes was for the family to spend three full days in Boston with the Boston Children’s Hospital Diabetes Program. Nurse educators and floor nurses from the inpatient diabetes team trained Jeff and Chanda on testing their daughter’s blood sugar, administering insulin injections and maintaining a healthy diet. “The goal of the education is to empower parents to take care of their child’s diabetes on their own, with our guidance,” says Goodwin. “If the patient is an adolescent, we try to empower the patient.”
After the initial inpatient stay in Boston, Melandia was scheduled to see Goodwin twice a year and nurse educator Susan Crowell an additional two times a year for followups. The 2-hour round-trip visits to Boston or Boston Children’s Physicians Weymouth were difficult on the family, but Chanda says they were worth it. “We learned so much from Susan. Especially in the beginning when everything was coming at us all at once and we didn’t know what to prioritize, she was really great about helping us focus and stay on task.”
Melandia faces high blood glucose levels
Within a few months of Melandia’s diabetes diagnosis, things were looking up. Melandia had connected with other kids with diabetes, her school nurse was on board, and her blood glucose numbers were under control. “It has been a life change for us, but we’re really lucky that Melandia is such a trooper,” says Chanda. “She’s one of those rare kids who’s not embarrassed about what she’s going through. She is very open about her diabetes and wants to talk about it.”
Melandia’s blood glucose numbers were steady enough at that point that she stopped needing insulin injections. Instead she began receiving insulin through a pump: a small, computerized device programmed to deliver insulin directly into her body.
But after about a year, Melandia started to experience very high blood glucose levels. Chanda made an appointment with Goodwin, who reassured her that the sudden spike was due to the fact that Melandia was coming out of what is called the honeymoon phase. Goodwin explains, “Blood sugars are high when a patient is first diagnosed with diabetes, but then after about a month the numbers go into a tightly controlled or normal range—this is what we call the honeymoon phase. With time, blood sugars start to rise and the honeymoon goes away.”
Goodwin made small adjustments to Melandia’s insulin intake and additional changes again a week later to lower her blood sugar.
The same care with a shorter commute
For Melandia’s latest two appointments and any other followups going forward, the drive to see Goodwin is much shorter. With the opening of a new facility at Boston Children’s at North Dartmouth—seven miles from the Coutinho’s home on the south coast—expanded services have become available, including continuing care for return diabetes patients.
“The convenience is a lifesaver,” says Chanda. “I know other families who have children with diabetes who have to travel great distances for care, and it’s cumbersome to say the least.”
A diabetes advocate
With two years of diabetes management under her belt and her blood sugar levels down, 10-year-old Melandia is thriving.
She recently started fifth grade plus a new season of soccer, which has her playing five days a week. “It’s pretty intense but as long as she enjoys it, we’ll figure it out with her,” says Chanda. Goodwin agrees with this approach.
“Exercise is a good thing because it tends to lower blood sugar,” he says. “We teach patients how to manage their blood sugar while they’re in physical activity—by either adjusting their insulin doses or by adjusting their carbohydrates.”
On a recent typical afternoon, Melandia swings from trees and slides down rocks with Marcio, stopping to test her blood glucose. Without flinching, she pricks her finger and reads the result – 220. “Eh,” she shrugs, knowing from experience that 220 is acceptable for her age and for what and when she last ate. She runs off to catch up with the very active Marcio. “We try to keep life as normal as possible,” Chanda says. “We don’t want the diabetes to manage her. We want her to manage the diabetes.”
Every January, for a few short weeks, the population of picturesque Marlow, New Hampshire, grows just a little larger.
A dozen or so high school students converge upon the storybook New England village to begin preparation for an epic adventure: a 600-mile circumnavigation of Vermont by backcountry ski, white water canoe, rowboat and bicycle, led by Marlow-based wilderness school Kroka Expeditions.
Under the mentorship of guides and woodsmen, the students learn skills to navigate the six-month, semester-long journey through the wilderness. There is no “how to” book, no survival guide—just a few unwritten rules to live by. But 18-year-old Rachel Hemond, who has Type 1 diabetes, doesn’t need much direction when it comes to survival.
Diabetes management can drain anyone. The multiple daily needle sticks, constant need to estimate carbohydrate intake and occasional hypoglycemic dizzy spells are tough to manage. These challenges may be magnified for kids with diabetes, who often find it difficult to stay on top of managing their condition while also juggling school, sports and time with friends.
Yet, 19-year-old Henry Abrams, a Cape Cod teen diagnosed with type 1 diabetes at age 12, says he’s grateful for its life lessons.
Henry, currently an engineering student at University of Massachusetts, credits his ability to keep his glucose levels under control to his math finesse. “I can estimate the amount of sugar in food and make the adjustments I need.”
Henry’s mother, Lysbeth Abrams, says he’s taken the diagnosis in stride from day 1, finding ample opportunities to learn from his condition, whether it be math or nutrition or task management.